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The Beerys Dystonia Journal

We hope that this journal will help others better understand one family's journey with Dystonia.
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Entries for December 2010

21

Appointment went well, waiting for therapy

Retta Beery posted on December 21, 2010 09:53 Article Rating
We met with Dr. Friedman on Tuesday, December 14th, 2010.  We spent almost 3 hours with her as she wanted to thoroughly explain the findings of the genetic mutation in Noah and Alexis.  She had a power point presentation and had printed out copies of it for Noah and Alexis.  She went through things on a very easy to understand level and then asked Noah and Alexis, along the way, if they had any questions.  They did, especially Alexis.  Dr. Friedman was patient and thorough as she really wanted them to understand what pathway the mutation was in, how it effected their function and what treatments could help alleviate some of their symptoms.  She told them to keep their packets and throughout the years they could open them up as they had questions or wanted to remember some of the things we discussed.  It was truly an incredible appointment as her desire was to educate them so they could understand what is going on in their brains.

Dr. Friedman gave me mounds of paperwork to fill out and asked if a couple of Noah and Alexis’s teachers would complete some packets as well.  She wants to have a clear record of where they were, emotionally and physically,  before the 5-htp, so she can gauge any changes that have taken place after administering the medication.  She filmed Noah and Alexis doing some things such as walking, working fine motor skills, etc. 

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17

Update from September 5, 2007

Retta Beery posted on December 17, 2010 10:25 Article Rating

Hello everyone,

Thank you for all of your prayers for the News Channel 3 piece and the Discovery Health’s “Mystery Diagnosis”.  It has been so amazing to watch God work through each of these venues and to see what only He could do!

The News Channel 3 piece was only slotted to be a 2 to 3 minute segment, primarily promoting the “Mystery Diagnosis” show.  However, it turned out to be a 6 minute segment and so much more than we could have ever hoped for!  Tara Hitchcock did the interview and she was wonderful!  She allowed me a lot of time to share information as well as our story of prayer!  Noah, Alexis and I had such a peace about us, what an answer to prayer!  Alexis and Noah were a bit nervous at first as we had to sit on the set very quietly for about 10 minutes while they did a few other pieces, but once they were involved in the interview they lit up!  God was present and working in every detail….thank you SO much for all of your prayers!

The “Mystery Diagnosis” piece was done really well.  They did edit out our faith, but included Joe saying at the end that it was a miracle.  I know that God has a purpose for every opportunity He has given us to share His story and He is working through every detail.  Proverbs 3:5& 6 “Trust in the Lord with all your heart, and lean not on your own understanding, in all your ways acknowledge Him, and He shall direct your paths.”  We trust God completely and know that He will continue to direct our paths, we just need to keep our eyes and our hearts focused on Him every step of the way.

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10

Hoping for an appointment next week

Retta Beery posted on December 10, 2010 10:50 Article Rating
I spoke with Dr. Friedman last night.  She is working on putting all the pieces into place so that we can move forward with this new therapy for Noah and Alexis.  She wants to slot out several hours in her schedule to meet with the three of...

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09

Waiting for therapy, praying for healing

Retta Beery posted on December 09, 2010 15:40
I spoke with Alexis and Noah's neurologist last week and shared the information with her about our visit to Houston.  She couldn't believe the news when I told her of their mutation, Sepiapterin reductase (SR).  She explained to me that she had just finished writing a paper on this exact mutation the weekend before our conversation.  There are only a handful of people in the United States with this mutation and around 30 in other countries.  She gave a lecture on this mutation last year and is currently treating a patient with this same mutation.  As she explained the "odds" and "coincidence" of her treating Noah and Alexis, I explained our faith and how we know she was an answer to prayer.  We have been traveling to St. Louis since 2002 to see Dr. Brunstrom for neurology, we just switched to Dr. Friedman about 2 months ago.  God is moving!!

As we spoke on the phone, I explained to her how I felt there was a link to Alexis's breathing problems.  She told me she did think this could be a possibility.  I told her we wanted to start Noah and Alexis on 5-htp and she suggested we look at a few other options.  She gave me some background on 5-htp, her exposure to it, etc.  We both had some investigation to do.  

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